Educating Loved Ones about Your Health During the Holidays

By Toni Bernhard, J.D. on December 13, 2012 - 8:42am

Chronic health problems pose a challenge to relationships any time of year. Most people don't understand the debilitating effects, physical and mental, of unrelenting pain and illness—unless they experience it themselves or are the caregiver for someone who is experiencing it. During the rest of the year, many of us have learned to limit interactions with others in order to manage our symptoms.

But when the holidays arrive, if we're not careful, we can find ourselves suddenly thrust into the middle of a lively and chaotic social scene where we're expected to participate in a range of activities, often for days on end. As a result, this time of year can be a recipe fordouble disaster—the increase in activity exacerbates our physical symptoms, while coping with sadness, frustration, and maybe even guilt about our physical limitations gives rise to emotional pain.

No wonder many of us with health problems dread the holiday season.

We can do a lot to minimize the negative effects of the holidays on our health by being sure that loved ones know about our limitations. If you're one of the many people with chronic health problems who don't look sick, the burden is on you tomake your condition "visible." If you don't take this pre-emptive action, people's expectations of you may be way out of line with what you can handle.

Here are some suggestions for helping loved ones understand what your life is like so that all of you can better enjoy this time of year:

In person, by phone or email, let loved ones know in advance what to expect from you during the holidays.

You might start by telling them that how you feel on any given day is unpredictable. Even if you rest for days in advance, you may feel sick or be in terrible pain on the actual day of a gathering. The unpredictability of chronic pain and illness is the single hardest concept for others to understand—that we can spend weeks in full "rest mode" before a big event, yet still be virtually non-functional when the day arrives.

I also suggest letting them know that, as much as you'd like to participate fully, you may have to skip some events or come late and leave early or excuse yourself at some point and go lie down. In my experience, spelling out my limitations ahead of time is helpful, not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting that I might be doing so.

This happened to me this past Thanksgiving. I had to leave the table mid-meal because I was too sick and in too much pain to continue to sit up. But I felt okay about leaving without explaining myself (so I didn't interrupt the ongoing conversation), because I knew that my husband and my son and my daughter-in-law would know exactly what was going on with me. So, although there were others at the table who probably didn't know why I disappeared, the fact that I knew that these three people did know, gave me the courage to do what I had to do in order to take proper care of myself.

Enlist the help of an ally.

If you find it hard to explain to loved ones in advance about your limitations, think of whether you have a close friend or family member who understands what you're going through and ask that person to help you explain your condition to others. You could ask your ally to talk to loved ones on your behalf or to be present with you when you explain to them what to expect from you during the holidays.

Having a neutral third party involved like this can make a tremendous difference: it can magically turn your loved ones into good and sympathetic listeners.

If your ally is present at a gathering with you, ask him or her to be supportive if you have to leave early or go lie down. You could even ask your ally to let you know if you're wilting (as we call it in my household). It's so helpful for me to be "prompted" by my ally (my husband) because, when I start to overdo things, adrenaline kicks in which fools me into thinking I'm doing fine. But using adrenaline to get by just sets me up for a bad crash later on.

Think long and hard before you decide there's no such person in your life. Your ally may be a close friend or family member who's just waiting for you to enlist his or her help. That said, if you have no ally (I know that's the case for some), I can be your ally via this article: if you think it would be helpful, send the piece to those you wish would understand your circumstances better.

Recognize that some loved ones may never accept your limitations, and resolve not to let that cause you to doubt yourself.

Some family and close friends may never accept that you're disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability to accept how you are is about them, not you. Don't let their doubt make you doubt yourself. Your medical problems may trigger their own fears about illness and mortality, or they may be so caught up in struggles of their own that they're not able to see their way clear to empathize with you.

Just as we can't force people to love us, we can't force people to accept us as we are. I've found that getting angry at others when this happens just exacerbates my symptoms. The Buddha said that when we direct anger at another, it comes right back to us—like fine dust thrown against the wind. That's why it's important to protect ourselves by not letting others' lack of understanding upset us.

The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel misunderstood by family or close friends, here's what I do:

First, I acknowledge that I feel hurt. Trying to pretend I'm not feeling the way I'm feeling only intensifies the emotional pain.

Then I reflect on how there are many possible reasons for their behavior and how I need not take it personally.

Next, I resolve not to let their treatment of me affect how I treat myself: regardless of what they think, I know I'm sick; self-care is my first priority.

Finally, I work on genuinely wishing them well, despite their lack of understanding. A little bit of well-wishing can go a long way toward relieving my own emotional suffering.

My heartfelt wish is that your loved ones come to understand and accept your limitations, but that if they don't, you'll be able to accept them as they are without bitterness.

When Poor Health and the Holidays Collide

By Toni Bernhard, J.D. on November 18, 2012 - 10:04am

As people around the world celebrate the holidays, it's a "happy/sad" time of year for many of us (to use an expression coined by Buddhist teacher Jack Kornfield). I want so badly to spend time with my loved ones, but I also know that I won't be able to participate fully in the festivities and that even my limited participation will result in "pay back" later on.

To make matters more difficult, I find it hard to muster the discipline to limit that participation, even when my body is sending me strong signals that it's time to stop. For example, at our house in November, our son and his family and a couple of close friends come for a Thanksgiving dinner that my husband cooks. When everyone arrives, invariably, I start out with a burst of energetic socializing—a reaction to the fact that I spend so much time alone. I might be able to last longer if I paced myself, but I'm rarely successful at it: I'm just too excited to see everyone.

As I talk about in my book, How to Be Sick, one of the bitterest pills for me to swallow when I became chronically ill was that suddenly the very activities that brought me the greatest joy were also the activities that exacerbated my symptoms. Prolonged socializing is one of those activities.

The most difficult challenge for me has been learning to cope with the isolation I feel when I have to leave a gathering and retire to the bedroom. It's particularly difficult because it always seems to coincide with the time when socializing has become easygoing and mellow. It's not unusual for conversation to be polite and stilted when people first gather. But after a while, everyone relaxes. By the time I've mustered the self-discipline to excuse myself, I retire to the sounds of warm conversation, spiced with peals of laughter. It's the very time I want to be with everyone.

When I get to the bedroom, I always think, "If only the party had started right at this moment, I could there for the best part!" At first, I'm overcome with sadness as I listen to the sounds of socializing coming from the front of the house. But over the years, I've developed some practices to help alleviate the pain of being isolated from others. Here are four of them.

No Blame!

I used to compound the emotional pain of having to leave a gathering by blaming myself for not being able to stay. It's not uncommon for those of us who suffer from chronic pain and illness to think that it's our fault for some reason. People write to me all the time, convinced that some kind of moral failing on their part brought about their health problems. Let me set the record straight right here: it's not our fault that we are sick or in pain. We're in bodies, and bodies get sick and injured. It could happen to anyone.

It took me many years to stop blaming myself for being sick. But when I did, the feeling of relief was tremendous. It was like laying down a heavy burden. And the reward was that it enabled me to begin to treat myself with compassion. Self-blame and self-compassion are incompatible. I hope you'll work on replacing the former with the latter.

Self-Compassion

As I settle onto my bed, I don't try to deny that I'm sad. Pretending that I don't feel sad or frustrated or any other painful emotion just strengthens it. So, the first thing I do is to gently acknowledge how I'm feeling. Then I speak to myself compassionately about those painful emotions.

If you'd like to try this, I suggest you pick phrases that fit your particular circumstance and repeat them silently or softly to yourself: "It's so hard to leave the gathering just when the conversation is getting good"; "I'm sad to be alone in the bedroom." Repeat your phrases, maybe stroking one arm with the hand of the other. Stroking my arm or my cheek with my hand never fails to ease my emotional pain.

If speaking to yourself in this way brings tears to your eyes, that's okay. They're tears of compassion. To quote Lord Byron, "The dew of compassion is a tear."

Feeling Joy for Others

Sometimes I practice what's known in Buddhism as mudita. It means cultivating joy for others who are happy. I think about the good time everyone is having and try to feel joy for them. If I feel envy instead, I don't blame myself. I just acknowledge with compassion that this is what I'm feeling and then I try mudita again. I imagine their smiling faces and the sound of their laughter. After a time, I can't help but feel happy for them, even if I'm still sad. And sometimes, I even start to feel joy myself, as if everyone is having a good time for me.

Tonglen

My most reliable practice for easing emotional pain during the holidays istonglen. Tonglen is a compassion practice from the Tibetan Buddhist tradition. It's counter-intuitive, which is why Buddhist teacher Pema Chödrön says that tonglenreverses ego's logic. Here's why it's counterintuitive. We're usually told to breathe in peaceful and healing thoughts and images, and to breathe out our pain and suffering. In tonglen practice, however, we do just the opposite. On the in-breath, we breathe in the suffering of others. Then, on the out-breath, we breathe out whatever measure of kindness, compassion, and peace of mind we have to offer them, even if it's just a little bit.

Here's how I use tonglen when I'm overcome with the pain of isolation at holiday time. I breathe in the sadness and pain of all those who are unable to be with family and close friends. Then I breathe out whatever kindness, compassion, and peace of mind I have to give them. As I do this, I'm aware that I'm breathing in my own sadness and pain, and that when I breathe out kindness, compassion, and peace of mind for them, I'm also sending those sentiments to myself. I like to calltonglen a two-for-one compassion practice—we're not only cultivating kindness, compassion, and peace for others who are alone, we're cultivating them for ourselves.

When I practice tonglen, I feel less alone because I experience a deep connection to others who, like me, can't fully participate in holiday festivities. Sometimes my eyes fill with tears as I breathe in other people's pain and sadness surrounding the holidays, but I know these tears are "the dew of compassion"—for both them and for me.

If you find it difficult to breathe in other people's suffering, then modify the practice. Rather than taking in their suffering on the in-breath, just breathe normally and call to mind others who share your circumstances. Then, in whatever way feels natural to you, send them thoughts of kindness, compassion, and peace. You need not breathe in others' suffering in order to feel connected to them or in order to enfold both them and yourself in your heartfelt wish to ease the suffering of being isolated during the holidays.

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Discovery Health's Mystery Diagnosis

When illness strikes, we look to doctors for answers. What if they can't help? For these unlucky patients, diagnosis is a mystery.

Old and New Me

In 2014, i'm reversing my cortisol in search of my old self

Disclaimer: I Am Not a Doctor

I am not a medical professional. I am not a doctor nor have I gone to med school. I am not a physician assistant, a nurse, or a lab technician. I do not currently work in the medical field.

Perhaps what I can provide is actually better and more useful: a tale of odd symptoms, mild physical deformities, and emotional/mental experiences that match your own. It's not just you! I can share my experience in the diagnosis and treatment of my Cushing's disease. Due to this disease's 'rarity,' I relied on my Cushie friends to guide me as we fight this terrible disease. We all quickly learned the basics and the jargon: the body parts, hormone loops, testing protocals, surgical stats, surgeon bios and pedigrees, and paths to recovery. We have seen patients have successful surgeries, and we have seen patients continue to suffer after multiple surgeries. We watch the story of Cushing's unfold for our friends in real time. Our friends are case studies that are unimpressed by whether something meets the standard of 'statistically significant' to be included in the medical literature. We Cushies see and hear it all. We encourage you to grow the same eyes and ears.

We urge you to take an active role in your health care and work closely with medical professionals. If you find a doctor dismissive, find a new one. Use my blog to supplement your knowledge base but never substitute my judgment or decisions for your own.

And please, don't sue me. I have no money left over after medical expenses. One day, I swear, I'm gonna take a nice vacation.

In Memorium: Those We Lost to Cushing's (hyperlinks take you to obituaries)

WHERE TO START IF YOU ARE NEW?

This side bar is intended to be a mini Cushings 101. You will find much of what you need to know here. Click through these links and watch these videos. They are my favorites after researching for Cushing's for six full years now. I started this blog in 2008, so the broad view posts about me can be found there. Click around previous blog posts and read, read, read. You will get scared and overwhelmed, but with information, you will start to take charge of your health and you will arm yourself with what you need to win this war. Because you will, you know. You will win this war.

Looking for something? (under construction)

~BEST ADVICE BASED ON MY EXPERIENCE~

This disease is an enigma - a mystery wrapped in a riddle.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high versus low, and frankly, it is quite unfair that we should have to know. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure whether the cortisol is high or low. I hope the Addison's community will take the lead on that!

I encourage you to test your cortisol testing every night in a row until you get your highs. Do not skip.1) Do 24 hour UFCs with 17-OHS.2) Get cortisol blood draws at midnight and again 30 minutes later.3) Chew a salivary cortisol test swab while getting your blood drawn each time.

I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. Take control. Your mission is to show up every night, and hang in there.

TRUST YOUR GUT. It just might save your life.

I am a cyclical Cushing's patient. I had transsphenoidal pituitary brain surgery on June 11, 2009. By going through my nose with scopes and scalpels, my neurosurgeon removed a 3 millimeter ACTH-secreting benign tumor on the left pituitary that disrupted every hormone and every body system. He says the tumor's cytology was consistent with other Cushing's tumors he has removed in the past, meaning that he removed a milky white substance that was different looking that the normal pinkish pituitary gland cells. Within 3 months of my surgery, I knew I was not cured. I still had Cushing's symptoms, and I tested again for a re-occurrence of Cushing's. In 2010 alone, F*I*V*E endocrinologists told me I don't have Cushing's and they think I never did. They said I had pituitary surgery for nothing. That includes two that I saw before my pituitary surgery. It seems doctors really don't know what to do with a Cushing's patient, much less one that comes back still sick after pituitary surgery.

In February 2011, I tested again at my local hospital, and I hit the jackpot: the highest results for midnight cortisol serums and midnight cortisol salivas that I have had in nearly 4 years. I also had nine straight days of high 17-OHS (used to measure urinary cortisol in patients with mild or cyclical Cushing's). I had diagnostic results on three types of cortisol tests: midnight salivary cortisol, midnight cortisol serum, urinary 17-OHS.

I had a 2nd pituitary surgery on April 20, 2011. The neurosurgeon removed a 5-millimeter benign tumor from the right side of my pituitary. I still suffer from high cortisol and high ACTH, with the latter pinpointing the source as pituitary. No tumor shows on my MRI so in August 2012 I started a medical therapy by taking a well-established medication called ketoconazole. This has helped me reverse some but not all of the Cushing's symptoms. Keto can cause liver damage so I must have liver function tests every three months. I hope I can continue to tolerate this medication until a tumor shows. Next MRI scheduled for June 2013.

WHAT DID I LEARN?Rather than test once in a while, I tested every day. My results clearly showed I had an abnormal cortisol production pattern. I was right. Those doctors were wrong. ALL OF THEM WERE WRONG. Trust your gut. You know your body.

Cushing's Awareness Challenge

What Doctors Will Claim You Have Instead of Cushing's:

Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)

Back and muscle pain

Diabetes

Blurred vision, visual field loss, double vision

Chronic fatigue syndrome

Dry, oily, or sweaty skin

Impotence or infertility

Joint pain, joint/bone abnormalities

Migraines

Muscle weakness, carpal tunnel syndrome

Temporomandibular joint/TMJ/jaw joint pain

Thyroid imbalance or "slow metabolism"

Spreading Awareness to the Health Community

Is it possible you have many conditions damaging your body simultaneously? Sure. Is it more likely that you have ONE condition that explains all that ails you? Yes. That could be Cushing's.

In medical school, doctors are trained that it is better to find one diagnosis to fit all symptoms. Go ahead and ask your doctor about that when s/he tells you that you have multiple overlapping illnesses.

Once you get abnormally high biochemical evidence (ACTH and cortisol) in the form of urine, saliva, and/or blood tests, it is highly probable you have Cushing's. Trust your instincts. Don't let the doctors tell you differently.

Different Doctors Treat Symptoms of Cushing's: A List of Professionals You May Have Seen

The pituitary controls the production of every hormone in the body. We Cushies go undiagnosed as we bounce around from medical subfield to subfield. Each doc treats the symptoms they know best, while piling on the medication.

We Cushies later find that our constellation of symptoms are punctuated with abnormal test results hidden away in our patient charts. No one told us. Since our medical history stays with the office not the patient, one change in doctor leaves these clues to diagnosis behind.

This is why I suggest you take a list of symptoms to every appointment. You won't be boxed in by narrowly-focused questions based on one field of medicine, but you can instead partner with your doctors and discuss your symptoms list so you can get the care you deserve.

DON'T GET STUCK SEEING A SPECIALIST WHO TREATS ONLY ONE BODY SYSTEM. CUSHING'S AFFECTS THEM ALL.

DISCLAIMER: ME AND MY CORCEPT

I want to disclose my relationship with Corcept Therapeutics. I participated in their market research study in Philadelphia, CA in February 2012. I gave feedback on marketing material and told my story on camera for internal educational use. Corcept paid for my travel expenses. In July 2012, I met the Cushing's advocate and nurse at the MAGIC Convention in Chicago. We shared a meal as a group, and she kindly paid for our dinner. In addition, I hold stock in Corcept Therapeutics; not because I am rich, but because I have Cushing's.

Please rest assured that this affiliation will never compromise my intent to bring patients all information I can get my hands on to help them on their road to diagnosis and recovery. You have my word.